Stage II cancer at 26 and now metastatic cancer at 31. Yep, I'm pretty much an overachiever. Found out my cancer was back nine days before my wedding. Doing my best to focus on the living part instead of the dying part. I think I'm hilarious.

Wednesday, October 17, 2012

Lost in Translation

I have had many conversations with other cancer survivors about the
insensitive things that people say when you have cancer. There are some classics
like 'it's only hair' (to which I started responding 'Oh great, so you're going
to shave your head with me') to 'Well, just stay positive' (like it's as easy as
breathing or blinking).

As time moved on and more and more people said the same things, I started
realizing that no one was trying to be hurtful or insensitive, they just didn't
know what to say. Another common thing was 'How are you feeling?' and I usually
responded with 'fine' for a few reasons. First of all, most people don't want to
hear about my diarrhea, my vomit, and the number of drugs that I'm on, most of
which seem to be counteracting the side effects of the others. The other reason was that I found that sometimes people would almost try to compete with me.
For example, when I said 'I am really tired' I was met with 'Uh, I know what you
mean, my son is sick and I stayed up all night last night'????? Nope, you don't
know what I mean. The anxiety of the disease, the chemicals of chemo, the
restlessness that some of the drugs cause and the fatigue of being sick all
mixed together keeps you in this zombie-like state where it's almost impossible
to sleep regardless of if it's the only thing that you want to do.

I think one of my favourite examples, because it happened so much, was the
number of times someone said 'You have breast cancer? My aunt had breast cancer
and she died three years ago.' What in the hell am I supposed to do with that?'
I wanted to say 'Well, I hope I don't die.' But, as time went on, I started to
realize that people were trying to relate to me. They weren't really saying
'Gee, you might die', they were more likely saying 'I had an aunt who suffered
through breast cancer and because of her pain I have an idea of what you're
experiencing.' It definitely took a while to understand this but after almost
pulling my hair out (wait, I guess I can't use this expressing in this
instance...) from the things people said, I needed to cling to some explanation.
I also tried to think of my life before cancer (maybe it's just me, but I
feel like I didn't have a life without cancer, anyway) and I'm sure I said
things like this because I had no concept of the psychological side of
cancer.

Another favourite is 'God works in mysterious ways', I wanted to say
'That's easy for you to say, you've never had cancer.' I think people wanted to
find a reason for my cancer so they would feel better about it themselves. If
they are able to blame stress, or the environment, or food, or deodorant, or the
microwave, or genetics, or plastic, or the birth control pill, or God, they can
decide that my cancer was caused by one of these many factors and can try to
avoid it. When I tell them that no oncologist can tell me why I got cancer, they
get scared and realize that it can happen to them.

I think one of my favourite (and I use that word loosely) things someone said
to me was all in the span of a red light. I was driving and my mom was in the
passenger seat. We pulled up to someone that we knew and rolled down the window.
The driver asked how I was doing and I told her that I was just about the start
my fourth chemo the following week and that I was a little nervous about it. In
my case, my chemo cocktail changed half way through (at my 4th treatment) and I
had heard of people being allergic to this cocktail causing severe vomiting,
etc. So anyway, the driver of the other car says 'Oh my friend Lois almost died
from her fourth chemo.' My mouth dropped, the light turned green, and we both
drove away. ALMOST DIED? Who says that??

The rest of the drive home, I was freaking out, 'almost died, almost DIED'.
My mom tried to calm me down by coming up with excuses for the driver but she
knew that what was said was so insensitive and just stupid. Again, I tried to
find a reason that someone would say that and I know, deep down, that she was
trying to relate. What she meant was 'I know you must be scared because Lois
really struggled with her fourth treatment.'

Even now, I seem to get a lot of 'Ugh, you must be glad that's over.' And I
know that people don't understand that cancer doesn't end when treatment does
but it's still hard for me to have a conversation when that is the starting
point. I try to calmly explain that I am still experiencing cancer even if it is
out of my body. I know what they mean is 'I bet you're glad that your hair has grown back,
aren't in chemo any more, and aren't experiencing the same physical side effects
that you were a year ago' but it's still a struggle to hear someone say that to
me.

My mom has compared it to being pregnant. She said that when her ankles were
really swollen, people would come up to her and tell her horror stories about a
friend of theirs who almost lost her baby when her ankles looked like that. Why
do we do this to each other? As I said, I think we choose relations over
mindfulness and rather than thinking of the consequences of our words, we try to
let the other person know that we have a slight understanding of what they are
going through. If I can give any advice, try to translate what people are saying
to you into what they could possibly mean, I know it kept me sane as I went
through treatment.

6 comments:

I totally know what you are talking about! People say the same things at funerals, too. While I had breast cancer, all I wanted was for people to hug me and support me. Words are often useless in those situations and actions truly speak louder than words.

I appreciate YOUR honesty. I'm sure I've done and said these things too - prior to cancer because it seems like you are relating but instead it comes across hurtful. Many times, it's no fault of anyone's, we just need to start a dialogue about these kinds of things.

I, too, was so irritated and hurt by some of the same comments. It took me just a bit to figure out others were just trying to connect and identify with me. Even knowing this, it could be a bummer to her about so and so who died from breast cancer. As they say, ignorance is bliss. I like your posts. I can so identify with you.